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Donna Day

Childhood cancer is nothing new to my blog. Dangit. I wish I didn’t have a whole section on it. But worse, the parents who have lost their own children to it, wish they didn’t belong to that club.

Donna is Mary Tyler Mom’s daughter, who was diagnosed in 2007 with an aggressive brain tumor. She passed away in 2009. A hard fought 31 months. Yes that is Donna in the picture above. She was only 20 months old when she was diagnosis.

You can read Donna’s story that was featured on Huffington Post in September here- http://www.chicagonow.com/mary-tyler-mom/2011/08/gold-is-the-new-pink/.

Okay, why am I writing about Donna Day?

St. Baldrick’s foundation, was formed in 1999 by a group of insurance executives.  Since that time they have granted over $100 million to researchers trying to find a cure for childhood cancer.  They are the largest funder for this outside the US government.  Their charity ratings are great and best yet, there is a focus on SHARING research.  So important for kids in small towns across America.

St. Baldrick’s is known for their events where folks shave their heads. My brother did it ages ago. In Chicago actually, and he’ll never forget it was the Miss Illinois at the time who actually did the shaving. It never grew back. Just kidding. Sort of.

So here is where I’m asking for your help. Okay, your money. Let’s be honest. Research comes down to money. Why is research important? Here are the staggering statistics:

  • More US children will die from cancer than any other disease, or many other diseases combined;
  • Before the age of 20, 1 in 300 boys and 1 in 333 girls will be diagnosed with cancer;
  • worldwide, a child is diagnosed ever three minutes;
  • the cure rate for the most common form of pediatric cancer, ALL leukemia, is as high as 90%, but most other childhood cancers do not have that success rate, e.g., brain tumors have a 50/50 cure rate, and some, like DIPG, are known to be fatal with no known treatment or cure;
  • 73% of kids who survive their cancer will have chronic health problems as a result of their treatment and 42% will suffer severe or life-threatening conditions like secondary cancers.

If the internet is good for anything, along with social media and the blogosphere, it’s reaching out and passing the proverbial collection plate. Right?

So here’s what you do- go to this link- http://www.stbaldricks.org/events/mypage/6969/2013 and click on the GREEN donate button. Give your coffee money for the week, or more if you can. It’s pretty easy.

An 89 year old grandma is shaving her head at the event! Wow! Kinda makes me want to join in too. Hmm….

So there’s your assignment.

Go do it for Donna.

RTLF #15- Siona’s Story

I had mentioned last week that I will do a series of stories for Childhood Cancer Awareness Month. I’m reading Mary Tyler Mom’s account of her daughter Donna and their journey through her cancer. She chronicles Donna’s cancer in a series for Huffington Post for this month of September. You should follow it too if you aren’t yet. And share it. Please, please share it.

My friends, the Shahs, found out in 2008, their daughter Siona, had Leukemia. She was only 4 years old. Not that any age is okay to get cancer. Isn’t it funny when we say that? She was only 2 years old, or 10 years old?  How  about 90? Would that be okay?  I don’t know.

I asked Siona’s mom to write her own words for their story. She does a beautiful job. Please read and share to spread Siona’s words of strength. I’m amazed at the Mary Tyler Moms and the Reshmas that I know.

And pay attention to the end. Siona’s older brother Sohil included a list of Siona’s lessons. We forget sometimes how siblings are affected. How one day, you become an only child. What burden does that carry? Sohil is a clever, smart and easy going young man. I admire him too for his strength and wisdom. Everyone can learn from Siona’s story-

This is Siona. Smiling like always.

Written by Siona’s mom- Reshma~

When your children are born, as parents you have this feeling that everything is well with the world.  You actually wonder what you ever did prior to having them and couldn’t imagine your world without them in it.
As they grow, every now then, they get ill and for a moment you get that feeling in the pit of your stomach.   The wave of relief when the doctor tells you it’s nothing serious, puts you back in that ‘all is well with the world’ place.
On a hot summer day in 2008, I took the kids to their first swim lesson together.  My son did well, but Siona, my daughter, cried through the whole lesson.  It was very unusual for her to be clingy and cry so much.   I made a note to ask the doctor about it later that day.  I was taking Siona in for a checkup because she had been sleeping a lot and she had a low grade fever.
The doctor took a look and ordered blood work and said it was probably mono, but blood tests should confirm it.  I went about my business thinking it would all be fine…the doctor said so.
The next morning, my husband woke me up early to say the doctor had called (at 5:30 a.m.) to say that we had to get Siona into Children’s ER in Seattle.  No explanation.  They couldn’t discuss it over the phone.
From that day onward life was never the same and would never be ever again.  Siona was diagnosed with High Risk T-Cell Leukemia on June 26th 2008.  We didn’t go home that day.  Siona was admitted to an overflowing cancer ward.  I will always remember that first night…listening to the other children in the room crying in pain and being sick.  The thought of Siona going through what those children were going through was unbearable.
Siona showed spunk from the very beginning.  When the tech came in to draw blood for the tenth time that first day she had no more fingers left to poke, except one.  She was mad, it was late and the tech couldn’t get blood.  I screamed at him to leave and Siona calmly gave him her only unbandaged finger – the middle one.   Appropriately, it symbolized my feelings to a tee. ‘Take that cancer!’
Life puts many obstacles in our way and how we choose to deal with them makes us who we are.  Children don’t even see these obstacles.  They are usually experiencing everything for the first time, so to them, if it is new it must be normal…right?  To Siona, every kid was doing the things she was.
Siona never cried about what was happening to her.  She cried when she was in pain when it was at its worst.  She took the daily needles in the chest, feeding tubes shoved down her throat and the constant prodding and poking in stride.  The long hospital days and long stays were accepted without question.  She would look around in the waiting room and comment on another girl’s cute shoes or notice a child crying and say, ‘He/she is not happy today.’  I could tell it would affect her.  She was always smiling and wanted that for the other kids too.  Her goal was to get out of the hospital as fast as she could, so she would opt out of the ‘let’s count to 10 before we rip this tape off your chest’.  Honestly, there is no gentle way to take a needle out of your chest!  She would say, ‘Just do it!  I want to go home and ride my scooter!’
The first year was the hardest.  The chemo made Siona very sick and also shut down her adrenal system.  She was on a feeding tube most of the first year.  She was a sight!  She would be running, riding her bike, and playing without a care – all with the tubes hanging out of her.  Cancer wasn’t going to slow her down.    As she grew older, Siona started to notice that she wasn’t getting to do the normal things other kids her age were doing.  The first day of kindergarten and getting on the school bus she had always wanted to get on weren’t going to happen for her.  We would keep the windows shut so that she couldn’t hear the kids outside.  Once, and only once, did she say to me, ‘Mama, I wish I was normal.’
Children with Leukemia go through a longer course of therapy.  Girls go a total of 2 years, boys 3.  After the first intense year, Siona went on maintenance therapy for the next year.  She was doing well until March 26th of 2010 (ahhh the 26th again!).  After a routine blood test the results showed some abnormalities.  Siona had relapsed.  It was like re-living the first time we found out, but worse.
With cancer you are bombarded with statistics.  Your child’s chances of survival are based on percentages.  It’s terrifying.  Siona’s chances weren’t great this time around.  The first time she had had an 85 % chance of surviving.  Now?  5% if she was lucky.   Siona needed a bone marrow transplant and donors for children of Asian descent are hard to match.  Her brother, who had decided he was going to save her, wasn’t a match for her.  We found two blood cords that may have worked, but first we needed to get Siona into remission.
We went to St. Jude’s in Memphis where they are 10 years ahead of all institutions in the search for a cure for childhood cancer.  We found out that Siona actually had a rare subset of Leukemia called ETP Leukemia.  It was newly discovered by doctors at St. Judes.  We were thrown back to the beginning…again.  A whole new diagnosis for which chemo is useless.  Siona should have had a transplant while she was in remission.  We were devastated.
We brought Siona home because that is where she wanted to be.  St Jude’s had new treatments, but they were all experimental.  No guarantees.  Siona was all about ‘Home’.  She just wanted to be home with her brother and family.
Through Siona’s illness she remained positive and would tell US everything was going to be okay.  We would call her the ‘wise one’ because she would say things that a 4 or 5 year old would never say.  She observed people closely and if she heard or saw that someone was hurt or down, she would try to cheer them up.
She once said to her brother who was sad to see grandparents go home, ‘Just because they are gone doesn’t mean that you won’t see them again one day.’  She was very practical girl in matters of the heart.  Her fashion sense on the other hand was a different story.  She was all about purple (a happy color in her mind), pink, and lots of bling!
She lived everyday to the fullest.  At least to the point her body would let her.  She loved holidays; Halloween, Diwali, and Christmas.  She loved to be with family and sing, do her arts and crafts, dance in her princess dresses and heels, and to giggle with her cousins.  She would look into the sky at butterflies and birds and wondered how it would feel to fly ‘free’ as she put it.  She taught many of us so much about life.  It was hard to think someone so young could be so mature and matter of fact.
She was so excited for Christmas 2010 to get here.  We know she hung on for that reason.  During her last week with us, she said her goodbyes in her way.  She told me, ‘Mama, I’m tired now.’ She made calls to family and left messages in the middle of the night.  She told me to ‘Be calm Mama, be calm’ right before the paramedics came to get her.  The night before she passed she told her Dad, ‘Daddy, I’m flying free!’
She is free to fly high in the sky now.  Free from pain.   We miss her terribly.  The house is too quiet without her loud voice and happy chatter and singing.   How do you learn to be an only child if all you can remember is having a sibling?  How do you parent an only child when all you remember is parenting two?  We are all re-learning how to live life without Siona.  As she said, ‘Just because she is gone doesn’t mean we won’t see her again one day.’
After Siona passed away, her brother sat down with his Dad to write down everything he had learned from his little sister.   He learned the most from his sister.   Her lessons to him became Siona’s Life Lessons for us.   He tries to live everyday with as much zest and enthusiasm as she did.  She would be proud.  We have included ‘Siona’s Life Lessons below.  They keep us strong and focused…living everyday with the way she would want us to – with purpose, making a difference.

Siona and her mom, Reshma

‘Siona’s Life Lessons’:

  1. Live with a smile.
  2. Never give up and always try your best.
  3. Be kind and accepting of people.
  4. Don’t complain about things that aren’t fair.
  5. Be happy with the small things in life such as hot cocoa at Starbucks or going to lunch with daddy, mommy or Mr. Lampy (as she called Sohil sometimes).
  6. Be positive and laugh out loud.
  7.  It’s okay to fly into the sky as long as you have lived with a purpose.
  8.  Always be kind to spiders, because they too have a Mommy and Daddy.
  9.  Always be truthful and tell it like it is.
  10.  Always enjoy moments – big or small.
  11. Be “just the way you are”.
  12.  Make a difference in people’s lives.

The backs of the shirts for our Team in Training for the Rock n Roll marathon and the Big Climb for the Leukemia Society. We are proud to wear Siona’s angel wings.

Thank you Reshma for sharing Siona’s story with us. It’s beautiful and inspiring. I know it was hard. I love you for helping me spread the word for you.

http://www.sionashah.com/

RTLF #14 – week 1- Cancer effing sucks

This is a repost from Friday- Gmail is being sneaky and sending emails to folk’s spam folders if they have ’causes’ in the subject. Hoping if you didn’t get this on Friday- you will today. Or if you did get it, you don’t mind seeing it again. Thanks!

September is Childhood Cancer Awareness Month.

“cancer is still the second leading cause of death in children younger than 15 years old (after accidents). About 1,340 children are expected to die from cancer in 2012.” (American Cancer Society) Does that not scare the shit out of you?? It does me.

How many people do you know who have or have had cancer? How many children do you know who have or have had cancer?

Sadly, my answer is 3. I know personally, 3 children that have had cancer. Two of them passed away. One of them is thriving today.

The way it comes into their lives and moves in like a horrible house guest, turns lives upside down.

I hope you’ve been reading Donna’s storyMary Tyler Mom is a writer the Huffington Post is featuring all this month. Her daughter, Donna, passed away in 2009 from a brain tumor. Thirty-one entries of what that family went through. We’re on day 7 today. I’m on the edge of my seat when I read it, barely breathing, thinking of what they endured.

My friend Christin’s son Kyle, passed away of a brain tumor in 2009. He battled for more than 2 years. He made it to his 8th birthday, and then slipped away soon after. Kyle defied all statistics. Most kids battling his kind of tumor only last a year, maybe 18 months. He lasted longer. Kyle was one of those kids you don’t forget about. We honor him every year in the Run of Hope in Seattle through Children’s Hospital. And we remember his birthday on January 17th as ice cream day. You are allowed to give your kids, and yourself, ice cream for breakfast, lunch and dinner. Because Kyle was smart that way. He knew how to live to the fullest, even if that meant dessert first!

This is the video they played at Kyle’s memorial that a friend of the family put together. I watched it recently and after 3 years, it still brings me to sobs. Please watch, but be ready with kleenex. http://vimeo.com/3262788 (copy and past the URL in your browser, or go to Kyle’s blog I have linked below.)

My friends the Shah’s daughter, Siona, passed away New Year’s Day, 2011 after her battle with leukemia. She was 6. 6 years old. She hadn’t even had a chance to go to Kindergarten. She was diagnosed soon after she turned 4 and those 2 years were spent battling for her life. They thought she had the ‘good’ kind of leukemia. The kind where kids recover and bounce back. When the cancer returned during the spring of 2010, we were in shock and disbelief. Within a year she was gone. Even after a valiant effort at St. Jude’s.  Siona wanted to have Christmas. Her doctors told her family to move it up on the calendar. They kept it on the 25th like it is. And she enjoyed every part of that Christmas.

My friends the Lefkows found out about their daughter, Ashely’s leukemia in 2009. She had the ‘good’ kind too. Thankful for them, she is a thriving 1st grader who was on the swim team this summer and loves building Legos with her brother and dressing up with her girlfriends. I wrote about the Lefkow’s journey here, and how glad we were when she finished her treatment in December.

I will have each mom (Kyle’s, Ashley’s, and Siona’s) write a piece for my blog this month so you can read their words. Unless you’ve lived it, you can’t imagine it.

We need to spread the word. A statistic says that in the past 20 years, only one new cancer drug has been improved for pediatric cancer. This is unacceptable!!

I won’t make this political, but for example, wouldn’t the billions of dollars being spent on this year’s campaigns be better used for cures and research? Makes me sick!

I wish I could say that I won’t know any more children who will have cancer. I won’t know any more families who have to go through this. Dear God, not mine! Right? Isn’t that what you’re thinking? It could be anyone. We can’t put a bike helmet on or knee pads to prevent it. We can’t keep our kids from junk food or too much TV, or buckle them in any safer in their car seat or have them take their cell phone going to their friend’s house. It just happens. Cancer just happens.

So share, spread, speak. We need to save our children.

For Donna, Kyle, Siona and Ashley, and many, many more.

Donna’s Cancer Story- read here

Kyle’s Blog- read here

RTLF #14 – week 1- Cancer effing sucks

 

this is a repost from Friday- Gmail is being sneaky and sending emails to folk’s spam folders if they have ’causes’ in the subject. Hoping if you didn’t get this on Friday- you will today. Or if you did get it, you don’t mind seeing it again. Thanks!

September is Childhood Cancer Awareness Month.

“cancer is still the second leading cause of death in children younger than 15 years old (after accidents). About 1,340 children are expected to die from cancer in 2012.” (American Cancer Society) Does that not scare the shit out of you?? It does me.

How many people do you know who have or have had cancer? How many children do you know who have or have had cancer?

Sadly, my answer is 3. I know personally, 3 children that have had cancer. Two of them passed away. One of them is thriving today.

The way it comes into their lives and moves in like a horrible house guest, turns lives upside down.

I hope you’ve been reading Donna’s storyMary Tyler Mom is a writer the Huffington Post is featuring all this month. Her daughter, Donna, passed away in 2009 from a brain tumor. Thirty-one entries of what that family went through. We’re on day 7 today. I’m on the edge of my seat when I read it, barely breathing, thinking of what they endured.

My friend Christin’s son Kyle, passed away of a brain tumor in 2009. He battled for more than 2 years. He made it to his 8th birthday, and then slipped away soon after. Kyle defied all statistics. Most kids battling his kind of tumor only last a year, maybe 18 months. He lasted longer. Kyle was one of those kids you don’t forget about. We honor him every year in the Run of Hope in Seattle through Children’s Hospital. And we remember his birthday on January 17th as ice cream day. You are allowed to give your kids, and yourself, ice cream for breakfast, lunch and dinner. Because Kyle was smart that way. He knew how to live to the fullest, even if that meant dessert first!

This is the video they played at Kyle’s memorial that a friend of the family put together. I watched it recently and after 3 years, it still brings me to sobs. Please watch, but be ready with kleenex. http://vimeo.com/3262788 (copy and past the URL in your browser, or go to Kyle’s blog I have linked below.)

My friends the Shah’s daughter, Siona, passed away New Year’s Day, 2011 after her battle with leukemia. She was 6. 6 years old. She hadn’t even had a chance to go to Kindergarten. She was diagnosed soon after she turned 4 and those 2 years were spent battling for her life. They thought she had the ‘good’ kind of leukemia. The kind where kids recover and bounce back. When the cancer returned during the spring of 2010, we were in shock and disbelief. Within a year she was gone. Even after a valiant effort at St. Jude’s.  Siona wanted to have Christmas. Her doctors told her family to move it up on the calendar. They kept it on the 25th like it is. And she enjoyed every part of that Christmas.

My friends the Lefkows found out about their daughter, Ashely’s leukemia in 2009. She had the ‘good’ kind too. Thankful for them, she is a thriving 1st grader who was on the swim team this summer and loves building Legos with her brother and dressing up with her girlfriends. I wrote about the Lefkow’s journey here, and how glad we were when she finished her treatment in December.

I will have each mom (Kyle’s, Ashley’s, and Siona’s) write a piece for my blog this month so you can read their words. Unless you’ve lived it, you can’t imagine it.

We need to spread the word. A statistic says that in the past 20 years, only one new cancer drug has been improved for pediatric cancer. This is unacceptable!!

I won’t make this political, but for example, wouldn’t the billions of dollars being spent on this year’s campaigns be better used for cures and research? Makes me sick!

I wish I could say that I won’t know any more children who will have cancer. I won’t know any more families who have to go through this. Dear God, not mine! Right? Isn’t that what you’re thinking? It could be anyone. We can’t put a bike helmet on or knee pads to prevent it. We can’t keep our kids from junk food or too much TV, or buckle them in any safer in their car seat or have them take their cell phone going to their friend’s house. It just happens. Cancer just happens.

So share, spread, speak. We need to save our children.

For Donna, Kyle, Siona and Ashley, and many, many more.

Donna’s Cancer Story- read here

Kyle’s Blog- read here